Karen Martin

I know that the thing that helped me the most was going to pulmonary rehab.  I met other people with the same/similar issues as I have and realized it is far more wide-spread than we think.  Seeing others getting on with life and being happy and helping themselves with exercise made me see the situation very differently.  I will admit that one of…[Read more]

Hi, Yoli.  Love the shortened version of your name.  I have been on Esbriet now for nearly two years.  I also had diarrhea for a time at first as well as upset stomach.  What I was told by the company was this: Eat a small amount and take one pill.  Do this again and again for the second and third pills.  But what they really stressed was the n…[Read more]

My daughter was diagnosed diabetic at a very young age.  Being small anyway, she had difficulty eating as much as the doctors wanted her to eat.  We were told at that time to look for “calorie dense” foods.  Perhaps this same advice might help your husband.  I wish you much good luck with this.  (Alternately, I would be more than glad to dona…[Read more]

Thank you Christie, Susan and Bill.  It is wonderful to have so many people respond so fast to a question like this.  I will definitely be calling both the electric company and the local police/fire/emergency departments about this.  I feel that I am properly “armed” now to present my/our case.

Susan, believe it or not, your reply made me laugh!  That would have been the perfect response.  I will admit that I was so stunned that all I could do was hang up.  What I really need to do is call back and, if I get the same answer, ask to speak to the supervisor.  I think that with your comment in mind I could do that without too much dif…[Read more]

When I called my electric company to tell them about my oxygen, they told me they base their jobs on priority and that isn’t necessarily one of them!  Nice, right?

Bill, I know oxygen isn’t flammable, but I was thinking about some of the other things you mentioned.  I secure my tank by tying it to the shaft of the headrest in my car, but still h…[Read more]

Sue and Jill, I never even thought about notifying my insurance company about the oxygen.  I was thinking more about informing rescue workers about my vehicle having oxygen aboard so if there was fire involved they would be aware of the potential for an explosion.  Guess I need to notify some other folks about this.  I also think I will call my lo…[Read more]

This is not really on the topic, but somewhat related so I hope someone might have the answer.  For those of us who use tanks and carry them in our vehicles, should there be some sort of warning posted on our car in case of an accident?  Since a spark mixed with the oxygen could result in a fire, that should be something police, firefighters or o…[Read more]

I believe that everyone has “something” that affects them to some degree or other.  We might not know they are dealing with a broken marriage or depression or cancer or any number of other things.  The automatic response to “How are you?” is “Fine, thanks.  And how are you?”  We really don’t know about most other people we meet in life are dea…[Read more]

Marianne, in regards to your BP being erratic, perhaps it was your anxiety over doing the 6 minute walk test that raised it so much.  I think most people have heard of “white coat syndrome” where you are reacting to being seen by the doctor, worrying about what they will tell you about your diagnosis or having some sort of test done.   You mi…[Read more]

Jane, when you get into bed with those awful chills, don’t neglect warm socks.  They make all the difference for me, even warming the foot of the bed beforehand.

When I first read this thread, I found it interesting but didn’t think it was a problem for me.  Recently, I realized that I am so accustomed to turning a fan on and off to keep me comfortable that  I was just not paying attention!  I also take Esbriet, but this problem pre-dates that.  I am fortunate enough not to have horribly serious ext…[Read more]

Char, I hope you get some relief for your dry hands.  Glad maybe I was of some help.

When I use foam soaps, my hands dry out more.  Wondering what sort of soaps you have been using, Char.  The hand sanitizer also doesn’t help.   Just as using Vaseline on your feet and then sleeping with socks on at night to soften your heels,  coating your hands and wearing gloves (or even socks!) will give you a boost.   Neutrogena makes a gel ca…[Read more]

Christie, I think perhaps fear is also a factor for me.  When I feel myself more often SOB, I wonder if it is my “fault” for doing/not doing something or if it is a sign that things are deteriorating.  Then, like an ostrich, I just want to stick my head in the sand!

I like Conni’s comment about doing anything other than breathing exercises, e…[Read more]

I find routines that ask you to inhale for a “deep breath” make me anxious.  I have trouble doing that.  I also have trouble holding it for extended periods at a time.  I don’t know if this is just my anxiety about being able to perform these tasks or actually my breathing ability (or lack of).  I also found the harmonica exercise interesting and…[Read more]

Hey, Yolanda.  Everyone is different in the way they react to meds.  I would talk to the doctor about it.  Mine told me we could be flexible about the dosage, so I suspect that may not be a problem.  I recently read about a study that said redheads usually need more meds, especially when dealing with pain.  Both my late husband and my gran…[Read more]

Yolanda, I know how the indigestion can be a problem.  I was told to be sure to eat enough protein before taking my Esbriet.  It was suggested that I eat a bit, take one tablet, eat some more, take another and so forth.  I did find that being sure to get protein in my diet helped with the problem.  You can usually call a number for the pro…[Read more]

William, that is a great post!!  Thank you for the up-to-date information.  You are absolutely right that another study needs to be done, or at least doctors need to see this!  I am sure you made many people feel LOADS better with this information.  Have a great day, everyone.  🙂

I had never read anything like this.  Due to the fact that it is supposed to be very quickly absorbed into your system, maybe most of what is excreted is not necessary for it to work?  To be perfectly honest,  I really don’t care how it works, only that it seems to.  Sometimes I revert to that old “ignorance is bliss” state.  🙂